Four Questions: I've been taking T3-only for... - Thyroid UK

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Four Questions

GKeith
GKeith

I've been taking T3-only for about 40 days now & I was on T4-75mcg & T3 10 mcg a day for a month, before that. I feel fine on T3-alone, am up to 25 mcg a day but I have a nagging feeling I want to be on T4 & T3, as it appears to me to be the simplest; if only the Levothyroxine was agreeable to my thyroid. The thing is I really want to try NDT before I try anything else. I feel as if T3-only should be my 'last resort,' because, let's face it, no doctor or endo wants to prescribe T3-only, to begin with: they want you on T4 just to prescribe some T3. This is why I would like to try T4 again and/or NDT before I say I am intolerant to everything else, namely T4, and/or T4, T3-together, and, I'd like to try NDT before “giving in to T-3-only” as it appears as if the NDT has T4 in it also, so I may have a bad reaction to NDT and, also, my, thyroid has it, (I still have one) and so I'd like to try every(any)thing else before I stick with T3 only. So, if anyone else here has had or has now, a similar “problem,” please answer for me these four questions: (1.) Was T4 “intolerant” to you? (I had headaches, heart palpitations and brain fog until I quit taking it.)

(2.) Did you add T3 to it and what happened? (3.) Did you try NDT yet? And if you did, what were the results? (4.) If you are now on T3-alone how do you feel and have you found your optimum dose yet? Thanks in advance to anyone, and everyone, who answers these 4 difficult questions, or has any comment.

13 Replies

Hi I sent a pm x

1) I was unable to tolerate T4 only. I became quite ill and put on weight, even though I was a good converter.

2) I managed to get T3 prescribed, and felt much better, and started to lose weight.

3) I tried NDT and it never made me feel well - the higher the dose, the worse I felt, until finally, I was the size of a whale, and more or less bed-ridden.

4) I've been on T3 only for several years, now, and feel much better - and slimmer! I've messed around with doses quite a bit and found that I feel best on 75 mcg - so, there's the possibility that I never felt well on levo only because I was never given a high enough dose to make enough T3 to make me well. That could have been the problem with NDT, too, given that there is only 9 mcg T3 in one grain. I don't know.

However, in the course of my experimenting, I tried adding in T4 at the beginning of this years, and found I could now tolerate 25 mcg. 50 was too much, so went down to 25 again. But, I had to reduce my T3 by 6.25 mcg or I felt over-medicated. So, now I take 68.75 mcg T3 and 25 mcg levo, and I think I've gone as far as I can with thyroid hormone. I increased, decreased, etc. etc. and feel that this is now as good as it gets. But, I also need to continually supplement my B12, vit D, vit K2 and magnesium, zinc, vit C, vits A and E and various other supplements. :)

GKeith
GKeith in reply to greygoose

How did you know you were a good converter (of T4)?

It sounds to me, as if you are where you should be and where everyone "experiments" to try to be. You say you are now at 67.75 mcg of T3 and 25mcg of Levo; do you take those together in one dose or ...? Do you get your T3 prescribed or must you buy iy yourself? May peace be upon you and thanks for the knowledge of your story.

greygoose
greygoose in reply to GKeith

I knew I was converting well from the blood tests - comparing FT4 and FT3. That's how you tell how well you convert.

I take all my hormone together in the morning.

Why are doctors so keen on levo? Because it's all they know about. It's all they learnt about in med school, and for them, all the rest is snake oil. They don't understand T3, they don't know what it does and how important it is. But, I have to say, some people to feel better when they take T4 with their T3, and others feel fine on T3 alone. It's a very individual thing.

GKeith
GKeith in reply to greygoose

Thanks for you knowledge, information, consistency & heart. May peace be upon you.

greygoose
greygoose in reply to GKeith

Thank you. :) And you too.

Hi,

have you tried reducing Levo and increasing T3? when you were on both, 10mcg T3 wasn't enough.Now you're on 25mcg T3, try adding some Levo gradually, instead of more T3 to see if you are o.k.

I am finding it hard here (U.S.) to get T3 without paying for it and just as hard to get NDT prescribed. When I tried them together, for a month, I experimented by reducing the T4 from 75mcg to half that and then took Levo at .44 mcg and neither workd. I may try to take 50 mcg Levo with the 25mcg T3 but I doubt it. Anyway, why? I feel great right now and see no reason to try T4 again. Why is T4 so important to these doctors and endo's?

I've never just taken T3 so can't answer your questions about that and I'm also thinking along the lines with what Greygoose has said but I think we should step back a little. My own story very briefly is that I was started on NDT many many years ago and had no problems but a prolonged strike at source persuaded me to start T4 and to be fair I was fine on that until relatively recently when I started back on NDT around 2-3 years ago.

What first struck me reading your post was that you hadn't found the right dose for you and may be assumed it was t working. Lots post their readings and they look good but they aren't taking enough.

So can you post your results from back then so we can see if that was the problem.

Again when doctor put you back on Levo it didn't seem to be working and I'm not convinced that was necessarily down to the fact it was T4 or that was the only thing 'wrong' so again your actual resultsxwould help to see what exactly was going wrong.

Also are you aware that all medication includes various fillers to bulk it up and also to keep it stable. One or more of these fillers you could have been sensitive to so then we have to trial other brands to see what our bodies are happy with so that could have been a contributing factor with whatever you were taking.

Are you converting properly is another common factor that doctors can easily mis interpret. We can only tell whether we are converting well if we are taking T4 only and this can be recognised by having bothoufh FT4 and FT 3 in the top third of their respective ranges. However FT3 isn't often routinely tested so without a full test we can never be sure. Doctors think it FT4 is on the high side and can't understand why you say you feel dreadful! So that's when we should suspect that a high FT4 could also mean that we aren't converting much of the T4 which is a storage hormone to the active T3 that every cell in our body needs to work well and make us feel well. So that is why many of us have to look at private testing to check on that. We recommend three labs who are able to do that though it's not cheap but they do have offers from time to time.

So why does this only work on T4 only? Well when taking anything with T3 in it results are read differently and in that instance only FT3 is reliable as the FT4 reading can drop and the TSH will be suppressed but FT3 should be high in its range but not above it.

Briefly other tests are important to keep your thyroid working well so testing of Vit D, B12, folate and ferritin are important and often if these aren't optimal, not just in range, we can struggle taking T3.

So lots of things really need addressing and I feel if you didn't know this as most doctors don't even know about it then you may be not getting the best from whichever medication you have tired.

Lots more about this and other things can be found of the Thyroid Uk site, they run this forum which is recommended by NHS Choices for thyroid disfunction.

So please post any results you have had on your journey so far as this will help us advise you. Your GP should have them on your file if you haven't got them. ALWAYS ask for and post the ranges as well as these differ from lab to lab so without them we should just be guessing and hopefully we shall be able to see why things weren't working well for you.

Glad you have found the forum.

I'm on T3 only because if I take anything with T4 in it for any length of time my free t4 goes up to top of range but my free T3 drops like a stone, so I feel hypo. However, I take a grain of NDT about once every week or so, as I feel better if my free t4 levels stay in range, not below, which was tending to happen. I just go on how I feel.

Have you tried to take NDP instead of T3 only? And, if you did, what happened? NDP has T4 in it.

Yes, my free T4 went right up and my free T3 stayed well under mid range. NDT plus extra T3 might work, but it's easier for me just to take T3.

That makes sense to me. May peace be at your side.

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